Thursday, 30 December 2010

Meet Lisa and her brother Tommy-Lisa`s son Kyle and Tommy`s daughter Emma. They live in Branford, Connecticut , U.S.A. Lisa contacted me several weeks ago through facebook and bought several bands from me- My heart went out to her as she wrote that her brother Tommy who is 52 had been diagnosed with ALS/MND less than a year ago now-I think these photographs are heartwarming and sums up what Christmas is all about- don`t you ?I love this photo-doesn`t it look lovely ? the fire is lit-the Christmas tree looks really pretty-presents are being opened- You can feel the love ! It`s obvious that this is a very kind , loving and supportive family .We need more families like Lisa`s to come forward and buy bands from us to help raise awareness of this very cruel disease- and by doing so help increase awareness and funding so hopefully one day a cure will be found. I started this blog because I wanted Andrew to feel loved and supported - but if other people out there like us- have a loved one suffering from this disease - maybe united we can make a difference-if you can, please help support this charity-it really does need your help,This coming year will be a busy one !The Presbytarian Church are holding a hotpot supper in January to raise funds for M.N.D.A. We have a calendar to design and produce- not to mention a photo shoot to organize on top of a suitable mountain with the M.N.D made from human letters ! We still have to work hard selling bands and raising funds to meet our £10,000 target-I have written to Asda`s again requesting a fundraising day[January the 30th] and if possible another bag pack !In march , Prestatyn Cons club have offered to hold a fund raising night- we will be holding another raffle-so if anyone out there has any unwanted Christmas presents please you know where to send them -we will be very grateful !Finally a big thank you to cousin Karen-instead of writing Christmas cards-the money she saved she donated to Andrews charity, also to fellow blogger Diane who writes a lovely blog called heartshaped-your donation was really appreciated -thank you xx Thats it for now !Wishing you all lots of love, laughter and good health and happiness for 2011- Jan and family xxxx

Wednesday, 29 December 2010

These pictures Andrew and Jayne took while on holiday a couple of months ago-at their favourite destination-they stay at the same holiday villa every time they go- they just love it there -I think you can see why ! On their last visit they went out on a boat trip-their villa overlooks the old harbour you can see in the photo, I will give you a few clues-It is a Spanish Island -37 miles long and 12 miles wide, it is situated 79 miles off the coast of Africa. Can you guess where Andrew and Jayne are in these photo`s and win yourself a free MND wristband ?

Sunday, 26 December 2010

Ann ,Andrew and me !We had a lovely family day yesterday- as you can see Jayne did us all proud and set the table ready for our arrival-The table looked lovely ! here we all are chatting and eating and enjoying each others company ! All the men got together to supervise the lighting of the Christmas pudding- John warmed the brandy first [apparently vodka is better-it burns for longer -we didn`t have any though hence the brandy!] the lights were dimmed but it kept going out before we managed to carry the pudding into the dinning room ![for all the ooohs and aaahs ]

It took several attempts and three men and a quarter bottle the brandy to get the thing alight ! It went up with a great whoosh nearly incinerating Andrews hand and eyebrows !After dinner we swapped pressies-above is Andrews mother in law Pat -wearing one of hers !This one might interest youTracey ! -Tim had a set of willy wigsJohn made a friend ! Andrew and Jaynes cat ! He sat for ages like that ! hope you are all enjoying your Boxing day !

Tuesday, 21 December 2010

Thank you Lynda for sending in this photograph which was taken in November time before all the snow arrived ! Lynda writes this village is best known for " The house in the clouds " which you can see in the photograph above- it is a converted water tower which is available for holiday hire, [ bet it has fabulous views !! ] This village was originally a small fishing hamlet in the late 19 C. However in 1910 a Scottish barrister bought the entire area and turned it into a private fantasy village, this small resort is purpose built around "The Meare " -a man made boating lake which is the focus of the village . So , where is Lynda ? any ideas ?I would just like to take this opportunity on behalf of Andrew and all of his family to give a heart felt thank you for all the wonderful and supportive comments and words of encouragement we have received since starting this MND awareness blog - To those of you who have bought bands and have sent in photographs - thank you big time ! this blog wouldn`t have worked with out all of your input !Wishing everyone a very happy Christmas from all of us in N.Wales xxxx to all of you out there ! xx

Sunday, 19 December 2010

Happy Christmas to Gwynnie and Mal ! Thank you for sending in this photograph taken just over a month ago now , can you guess the location ? a small clue -its taken here in the U.K. and is usually the first place [and last !] to get snow ! Please keep your photographs coming-especially those supporters who have had bands and yet to send their photo`s in ! I`am surprised I have yet to receive a photograph of a snowman wearing a band -so come on ! put all those kids to work and get them out from under your feet and lets have a competition for the best one !

Wednesday, 15 December 2010

Our bands really do find themselves turning up in all sorts of places ! And here is one in Bermuda !Dave Spragg sent in this photo of friend Mel Fitzgerald saying - "Mel is a great supporter of my charitable efforts and was more than happy to buy a band and take it halfway round the world "What stars thank you Mel and Dave ! though not sure what Mel looks like she`s doing ?Our next 2 photographs were sent in by Mal Torres who lives in Three Rivers, Texas. The above photo is of her daughter Lisa doing her farm chores wearing her band ! and the photo below Mal describes as old Tex spreading the word !I would like just to say a big thank you to my old set of neighbours Don and Sheila Hatch and Glenys and Geoff Sturgess ! We still keep in touch [ even after 7 years ] , When we left our old cottage we were heartbroken at leaving them behind and had joked that we wanted to take them with us ! Both have popped into the shop where I work this week with Christmas cards and cash donations for Andrews charity- your kindness is very much appreciated ! Thank you so much xxBig hugs to you both.

Sunday, 12 December 2010

Look who`s back ! and still on the run ! this set of photo`s Viv has captioned ! " Can`t catch me -I`ll swim for it ! " and " oh ! oh ! " I think every one will need a little help on this one as there are no iconic buildings or clues in the photo Viv ! so here goes !This is the youngest country on Earth -The last major land mast to be discovered , it has rich and facinating history many beautiful colonial buildings. It has spectacularly beautiful landscapes which include vast mountain chains , steaming volcanoes , sweeping coastlines , deeply indented fiords and lush rainforests , comparable in size to G.B. Colorado and Japan. Population 4 million making it one of the least crowded countries. A temperate climate makes it an ideal year round destination , sounds brilliant Viv ! You lucky thing ! oh -One last clue a blockbuster film was made here ! Good luck ! Win yourself the usual -a free MND wristband ! have a go !

Thursday, 9 December 2010

And the clue is in the title ! Can anyone tell me where in the world Nia , hubby George and family are enjoying a day out on the beach ? Another clue -they won`t be bumping into Viv !I`m pleased to announce Roly is the winner of our Coronation Street poster auction- it made the sum of £25 !! We are absolutely delighted- thank you Rol ! that was very generous of you and much appreciated . Not sure how many of you out there watched the Coronation Street disaster-I was a little disappointed I must admit- considering it cost £1 million to stage-it was not exactly a blockbuster moment but maybe I`m just hard to please ! Anyone who guesses the correct whereabouts of Nia and family I will send them a free motor neurone wristband! So go on have a go !

Tuesday, 7 December 2010

Congratulations to Mike and Beverly [Bev ] who got married last weekend here they are pictured at their reception ! For those of you with a good memory I photographed Mike outside the shop where he works a few weeks back [E.Jones and sons in Denbigh ] the shop was kind enough to donate a prize for our raffle , Mike and Andrew worked together for quite a number of years , unfortunately Andrew was unable to attend the wedding but just to let Andrew know that were thinking of him they posed for a picture ,they have promised to take a few pictures on their honeymoon for our travelling bands competition. Hope you have a brilliant time , wishing you lots of love laughter health and happiness ! All of Andrews family xxxxx

Sunday, 5 December 2010

Coronation street celebrates its 50 th anniversary this week ! A few weeks ago I buckled down with pen and paper I got on with some letter writing- I wrote to The Princess Royal [as you all now know ] , Coronation Street , Eastenders and Hollyoaks . I was hoping to get some celebrity faces to add to our blog supporters site ! Eastenders sent me a very nice letter returning the bands [ which I thought very nice of them ] declining my request ,[ o.k.- big sighs but at least they wrote back !] Coronation street sent the above picture [ no sign of the bands ] also declining my request but as a softener please find enclosed ! A very nice picture souvenir of all the cast with autographed printed signatures ! A moment of madness passed over me- regarding a red felt tipped pen- and the urge to draw them all wearing mnd wristbands ! hmmm ! What on earth shall I do with this ? I know ! How about I auction it ?For all you Coronation Street fans out there this week will be the hottest television event of the decade with one of the biggest stunts ever pulled off by a soap !The dramatic scenes took ten special- effects experts more than 250 days to film -costing £1 million , the most producers have ever spent on a stunt ! As well as killing off several well known characters the crash will create some exciting cliffhangers ! So grab the chance to get yourself this keepsake ! I will start the bidding at £ 3.00 [ just to cover postage costs ] ! You can email me a bid or better still write one in the comment box ! GOOD LUCK !

Thursday, 2 December 2010

Well, the wandering grey old geezer is back [ his words - not mine ! ] and he is going to give you all another shot at guessing his location ! Viv and his friend Betty are on their travels in a tough little four wheel drive camper van - they have nick named " the mouse "Viv captioned this photo -Convict on the run ! Will they catch him ? will they `eck !To give you a clue [ before you ask-Ann ! ] the beaches are famed for their driftwood ! Also a green type of gem ?And now we have " THE SOFA CHALLENGE ! " Andrew put a message on his facebook wall the other day asking people to support MND and to purchase a band from us and one lady replied £2.50 is nothing to donate , I lose more than that down the back of my sofa ! [ thank you Sara ]Yup ! you`ve got it- I want you all to check under your sofa cushions and any money you find donate to charity [ preferably this one ! please ! ] I have just found three quid , along with an empty crisp packet , an empty toblerone packet- [ not mine ! huh ? what ?] and hang my head in shame enough fluff to stuff a cushion with [ Lets not mention the biscuit crumbs ] Why not write in and let me know what or how much you found !Remember you can donate or buy your band through our donate button on the right hand side of the page- it is totally secure and safe or if you live locally in the Prestatyn area email me and I will give you details of where you can purchase your band from.

Tuesday, 30 November 2010

The other week I decided I would write a letter to HRH The Princess Royal, She is patron of the motor neurone disease association , so with that in mind I thought it about time she received an up to date and very sexy mnd charity wristband ! My sister and I did have a giggle writing the letter with all the things you could write but dare not ! Like a request for a photograph wearing the band- maybe send in a photo of just a wrist ?- you could turn your ring round or take off your watch if you do not want to recognized was one comment we came up with [ I know we are sad ] or could you leave a message of support for Andrew was another it would be lovely to have the first royal blogger [huh ?] We knew we would get a very polite refusal- but one that arrived in an envelope marked and stamped Buckingham Palace ! that alone was worth the effort-I smiled to myself as I bent down to pick it up off the hall floor wondering what my cheeky chap of a postman made of that envelope, mission accomplished ! An M.N.D. band made it to Buckingham palace !

Sunday, 28 November 2010

From left to right sister Ann, Peter , hubby Ned ,twin John ,Chris and DebbieFrom left to right Tracey, Ann . Jan and Ned

Well , what a wonderful show ! The girls were fantastic ! I really don`t know how on earth Shelly managed to put a show like that together- it must have been a huge amount of hard work -Shelley I take my hat of to you ! Our " team " arrived about half past six and started to set our table up immediately - the dancers and familys had already started to arrive, we had a prime position right outside the main entrance way, looking back I think it must have been a little intimidating as as I don`t think many people actually made it past us without buying a ticket ! I did manage to catch the first part of the show-The old smoke machine was going , setting the scene-you could feel the excitement growing ! the whole thing was very fast paced and smooth-girls of different ages [and some boys ] all coming on to do a set, some freestyle and some hip hop dancing to Alexander Burke, Pixie Lott , Cheryl Cole and many more ! The costumes were brilliant [ you must be very proud of you mum Shelley ] and the lighting effects and fire works - superb !Tracey and I went backstage to deliver the raffle tickets to the compere who was drawing them at the second half- what an eye opener ! I walked down what seemed like miles and miles of corridors with rooms packed full of girls all having their hair and make up done- Imagine having to control that lot ! On the whole things ran quite smoothly- I did manage to leave a few of the raffle prizes at home and had to hotfoot it back to collect them- arriving just in time before the end of the show ! phew ! Every commented on what great prizes we had -a huge thank you to every one who donated a prize- not forgetting the gentleman from Marine motors who made a last minute donation of a free car MOT -the lady who won it was delighted !and to Delyth for the beautiful hand made cushion which we have decided to keep for our next raffle !We made £ 327.00 !!! Special thanks to our team -Tracy, Peter , Debbie , John ,Chris , Ann ,Tim and Ned xxxxxx

Saturday, 27 November 2010

This picture arrived today sent in by a lady who lives in Texas USA. Mal and her family are currently enjoying their thanksgiving holidays- she wrote a lovely piece on her blog (http://saenzmom.blogspot.com/2010/11/i-love-holidays.html) about our fund raising efforts promoting our awareness campaign as you can see the bands I had sent her had arrived that morning ! Thank you Mal ! Hope you and your family have a very happy thanks giving holiday Any one wishing to donate or buy a wrist band, just look for the donate button on the right hand side of the page- payment can be made by pay pal and is totally secure and safe.I spoke to Shelley from the Inferno dance class last night for some last minute instructions regarding the raffle, poor girl was sounding a little stressed ! Her compare for the show tonight had cried off sick, one of the younger dancers had sprained her ankle and one of the older girls had tonsillitis - its a real shame as these girls have spent three years rehearsing for this show -I feel so sorry for them-Having said that I`m sure it will be a roaring success ! I have had a sneak preview of the girls costumes [Shelleys mum makes them all ] they are divine ! Looking forward to the show- see you there !

Wednesday, 24 November 2010

Thank you to Viv for sending in this photo of himself [wearing his band ] - but where about in the world is he ? Viv comes from Cardiff originally and wrote in before he set off on his travels - I will be gone for about three months [lucky devil ! ] but I will be in touch and send you some photos ! and this is the first - Viv himself in an` impossibly skinny racing surf ski -which has tipped him into the water several times `-he signs himself off as the wandering and grey haired old geezer !! One who is a very good sport apparently !! Take care Viv - and thank you- we will all look forward to seeing what you`re up to next !We are now all set for Saturday`s raffle ticket selling frenzy ! Many thanks to brother John`s father in law Richard for donating the monster box of crisps , John and Chris for the Cava , Ann for the fantastic hamper and Debbie and Peter for the lovely smelly things ! the raffle prizes seem to have taken over my front living room I can`t move in there ! every where you look there are boxes , banners , buckets and balloons [ need to remember to blow those up ] sashes ,wristbands , mnd car stickers along with all my own junk !! If I ever manage to sort it all out wish me luck !Andrew and his band Resistance are playing Saturday night [ will be sorry to miss his gig ] at the Cottage Loaf in Llandudno , please pop along and support him if you are in the area- the trusty bucket will out collecting funds for the Motor Neurone Disease Association ! please donate or buy a wristband and support our awareness campaign !

Sunday, 21 November 2010

Mal and Gwynnie are on the road again ! Can you spot where they are this time ? and no ! I will not be giving anybody a clue - its easy ! Have a go and win yourself a car sticker and a free wristband ! memo to Mal and Gwyn stop moving around the country so quickly I can`t keep up !Seriously though -thanks for being such good sports and joining in the fun- take care lol xx

A few weeks ago I mentioned our curate rev Kate`s Sunday school class called the early birds, the class were holding a harvest early birds breakfast. [ at the Prestatyn Parish church school rooms ] The breakfast Ann and I went to was a great success and was well supported ! [all the bell ringers stopped by for a yummy tea cake and a cup of tea ! ] Ann and I really enjoyed ourselves, everybody made us feel very welcome, we were thrilled to bits when Kate popped an envelope in to us containing the sum of £20 ! Turns out the £20 was to pay for the motor neurone bands she had sold ! The talk Kate gave to the class was about Leprosy and Motor neurone disease- the kids then went on to make a collage , [see photo`s ] the amount they raised for MNDA and Leprosy was split and we now possess a cheque for the sum of £75.00 ! Thank you all so much for all your hard work- I can`t begin to tell you how much we appreciate it, its feels great to have so many supporters and people who care out there giving up their time to help us ! I think you will agree the kids have done a grand job !We are now selling MND wristbands on Ebay ! Andrew and Jayne spent most of yesterday sorting it all out-you can check it out , item no 220699576026. I think we have all the angles covered now ! If you haven`t already bought your band please do so now ! and send in your photo wearing it ! We love receiving your photographs - we will include them all on this blog, we plan to send them all on to the MNDA for them to use in a U.K. awareness campaign

Thursday, 18 November 2010

Well, we are nearly coming to the end of our raffle prizes ! Sister Ann is making up a hamper [her speciality -it will be fabulous ] Brother John is donating several bottles of wine and I think there are a few nice smelly things to come ! .A great big thank you to the lovely lady who donated the set of bathroom scales [see above ] her name is Ann Tatham, I met her the other day in my sisters shop, Ann and her friend also bought some MND supporters bands from us-thank you so much-and to my neighbour Gwyneth who donated the body wash /spray and the mug with the chocolate covered spoons and truffles . yummy ! You know just what us girls like ! The teddy ? well I could not resist- he`s looking for a good home [hope you noticed he`s wearing his band ! ]

Wednesday, 17 November 2010

Many thanks to Dave Spragg and his family for supporting Andrew and sending in this photo !Can anyone tell me on which summit have these group of walkers arrived at ? The photo`s were taken on the 25th of October on what looks like to be a beautiful day ! I love the photograph above with just the hands -nice to think of people united together and joining in to help us raise awareness of this disease . Just look at the views in the back ground ! breathtaking ! well worth the trek.

Monday, 15 November 2010

This lovely raffle prize came all the way from Australia - courtesy of Linda ! the girls from the dance class will love this one Linda , clever lady ! We have had it wrapped all in cellophane and added a big bow- it was quite hard to photograph as the light bounces off the cellophane but believe me it looks gorgeous ! It comprises of all sorts of gorgeous things- a cuddly kangaroo with a baby in its pouch, a koala bear , clip on koalas, a bag ,notepads ,wrappping paper, a boomerang and cards ! Linda wrote apologizing that she had taken a few things out because of the postage costs [ around $72.40 ] and wrote it wasn`t one of my brightest ideas-I could have sent you a donation -!! on the contrary I think it will make a fantastic centre piece on the night and attract lots of people to buy our raffle tickets ! Well done and thanks Linda you`re a star !

Sunday, 14 November 2010

Thank you to our official photographer Stuart Lewis for sending in this photograph of his daughter Anna and her friend taken last Sunday, Anna works as a keep fit instructor at All Saints in Meliden, she completed the Delamere hell raiser run -it is between 10-12 miles and comes with the warning- beware ! there will be everything from running tracks and trails to water filled areas [ by the looks of things I think Anna found them alright ] and plenty of steep hills-expect to get very wet [ Anna ,why do you look soaked and your friend bone dry ? ] It will be nature at its toughest !According to Anna`s mother her running clothes are still soaking in a bucket [ Anna fell into a bog !!]Thanks girls for being such good sports and for wearing your supporters bands and sending in your photo !! Well done to the both of you !Any one out there got a similar photo ? send it in !

A welsh actor is among a team of celebrities who have agreed to help raise cash in memory of a popular Bangor man Iolo Owens who died aged just 50 from motor neurone disease. Llyr Evans -see pic [brother to actor Rhys Ifans ] and fellow celebrities from the S4/C programme Rownd@Rownd are playing against the HSBC bankers.The match has been organized by bank manager Gethyn , in memory of his father, it will take place at Y Felinheli Football Club Bangor on the

Sunday the 28 th November 2010, there is a half time raffle , with some fantastic prizes

Thursday, 11 November 2010

Our next raffle prize has been donated by Beauty by Hayley, 167, High Street, Prestatyn.Proprietor Hayley is pictured above on the left with her mum Theresa . I hope I win this one ! Its for a neck, shoulder and back massage ! I can`t remember the last time I had one of those , What a luxury ! Thank you- to both of you for supporting our MND campaign and for wearing your bands !Contact details for beauty by Hayley -01745 888988Oh by the way -the affilliated link I was after is now on the official MNDA web site-shop [just after mnd lovely ladies ] -thanks Susan x www.mndassociation.org

Wednesday, 10 November 2010

Many thanks to Sammy seen here standing out side her shop on what was a freezing cold day wearing her supporters band ! The things I get people doing ! Appreciated-thank you !Her salon has kindly donated a Free cut and blow dry to one very lucky winner of our dance inferno raffle prize draw ! A great prize for all those special parties and other occasions coming up! Also a big thank you to Aunty Judy for adding a bottle of whiskey to our list of prizes and to Doris Mc Gowen a regular customer of Ann`s who dropped off a tin of quality street and a bottle of sherry ! I can`t believe how kind and generous people are ! Thank you to you all !

Tuesday, 9 November 2010

Well , here we have some more traveling bands ? can any one tell me where these two characters are ? Yes ! you`ve guessed it -win yourself a free MND band and a car sticker-so come on have a go ! I have been in contact with the MNDA last week after having visited their site to order my christmas cards and have asked them to give us a affiliated link on their web site which they have agreed to do- I feel it gives us more of a official status ! So I`am feeling pretty positive about that ! A big thank you to a Mr Ian Wray for the fabulous donation of a bottle of Glenmorangie whiskey for our forthcoming raffle , it turns out that Ian knew Andrew through the Clwyd Vale Motor club many years ago when Andrew was a keen rally car navigator ! Ian had seen our request in the local paper for raffle prizes and decided he would like to support us ! Thank you so much ! I will be listing more raffle prizes this week.

Monday, 8 November 2010

Well as you can see we got our photo ! I thoroughly enjoyed the whole night , we arrived early as requested , had our photo taken with Frazer [who was charming ] then we skipped off to the pub for a large glass of wine before returning to the Scala to watch Frazer`s show. It was very entertaining and I can thoroughly recommend it to anyone thinking of going !After the interval [and another glass of wine ]there was a question and answer part of the show, the audience had previously been given slips of paper on which to write down any questions they wished to ask Frazer. Ned and I filled all the slips- putting aunty judys name on all of them [sorry jude- you know i`m shy !] I thought you handled yourself really well when they called out your name [not once but three times ]!!Frazer did talk candidly and with humour of his own battle with illness and in doing so gave us a plug about raising awareness for Andrew and mnd [ he was wearing a cancer charity wrist band aswell as Andrews mnd band]At the end of the show brother in law Tim sneaked off and bought me Frazer`s book called"Hines sight "and presented it to me signed by the man himself. A wonderful keepsake of a very enjoyable night-I won`t be forgetting soon !Thank you to our very own official photographer Stuart Lewis for taking the pictures xFor more info or to buy Frazer`s book www.frazerhines.co.uk

Friday, 5 November 2010

I met the actor Frazer Hines today , he walked into the shop where I work, what a lovely man ! He is touring the country with his one man show and is appearing here in our local Scala this Sunday. He is best known for his appearances in Doctor Who [playing along side the second doctor ] and for his role in Emmerdale farm as the gorgeous Joe Sugden [ he is still gorgeous- how come some men don`t seem to age] He was only too happy to support my brother Andrew awareness campaign and bought a wristband from me. " Have you got your camera with you ? You can take a picture now if you like ?" - Can you believe it ,the only bloomin time I didn`t have the camera on me [the language in my head was slightly stronger -I`ve toned it down a tad now !] Making a complete idiot of myself I found myself saying- " I used to have a crush on you when you were in Emmerdale " he replied laughing they all say " use to "- I replied backwell-you`re not in it any more !duh ! you would have thought I could have come up with something better than that ! after he left the shop I found myself rooted to the spot wondering did that just really happen ? ok who to phone first sister Ann , while texting Andrew- followed by hubby Ned ! !Frazer is celebrating 50 years in showbiz- his show is full of entertaining stories, he has worked with some of the best Charlie Chaplin ,Michael Caine ,Michael York and Omar Sharif to name but a few, he will be talking of the highs and lows of showbiz life-I`am sure it will be a fascinating insight into his world, hurry some tickets are still available ! I know where I`ll be- Frazer has promised me that all important photograph wearing his supporters band !! One of my favourite sayings- You`re a star ! well now I`ve met a real one ! and he was lovely !You can check out other tour dates via Frazer`s facebook pageshttp://www.facebook.com/pages/frazer-hines/89759313678 and the following bloghttp://gallifreynewsbase.blogspot.com/2010/10/frazer-hines-on-tour.html

About Me

My Name is Janet and my Brother Andrew is suffering from a version of Lou Gehrig's disease called progressive Bulbar Palsy.
This blog outlines my small but heartfelt efforts to support him and the ALS/MND association.